I have worked very hard all my life. I've been employed since the summer I turned 13, when I worked five days a week for a local dentist answering the phone, handing him equipment, cleaning spittoons, sterilizing supplies, taking out the trash, and cleaning his home once a week, from toilets to linens to stripping wax and reapplying it to his hardwood floors. All for $100.00 a week. And I was THRILLED!!!! Starting that summer and for all the others, including some school breaks, that followed, until I left that small south Alabama town with my Associate Degree in Nursing, earned at the local Jr. College....Jefferson Davis Junior College...to be exact, I worked for the dentist, earning the same rate of pay, eventually learning to make dentures in his lab, saving my money. Those earnings allowed me to fund my move to Chattanooga and start work in the big city as an RN in the local Children's Hospital...for $7.70 an hour. I was in high cotton. I had an apartment (albeit a tiny one!!!), paid all my own bills, and learned new things everyday. And, yes, it has been a while back, but this was just in the mid-80's y'all!!! I've put myself through school via scholarships and my own pay check three times. Yes, I married a doctor, who put himself through school by working three jobs and taking student loans, which we paid off together during our marriage. And you know what???? I am lucky and wealthy beyond measure. Obviously rich in friends and family and life experiences, but those will not buy you cancer care. The fact that I have been able to afford the care I have attained puts me in a small minority group. The fact that I could pay for the trips to Tampa and the car and hotel and food it cost me while there makes me different. I paid the deductibles, co-pays, and the out-of-pocket expenses of $800.00 every three months just for the scans, required for my trial participation, myself. Moffitt didn't pay for those. BMS didn't pay for any of those expenses. How many people do you know who could afford such care? I don't know very many. Most of the people I work with, people I care for, my friends and family could not. Is that right? I don't think so. And when you look at the video describing the imbalance of wealth below....sadly the outlook is even more bleak....
Wealth Inequality in America
So, Weber and Ribas agree (see 11/18/13 post) that if you have melanoma (or perhaps more specifically...if THEY had melanoma) you should get yourself to a top-notch melanoma cancer center. I agree. I did that. But, how are most folks supposed to make that happen? Yes, there are a number of agencies and programs that can provide at least some assistance, but that means that a sick and frightened person is going to have to have the where-with-all to find and access that.
We were all so happy that ipi was approved by the FDA. Only to find that Weber and Ribas admit, folks are not prescribing it in their local offices or county facilities. They haven't bothered to credential folks to do it and are not utilizing it because of cost. They are not willing to eat the wholesale cost of $120,000 if the insurance company won't cover it or if the patients themselves fail to pay for "their portion." Not really how we all thought this was going to roll, is it?
I don't have a ready answer. I don't know what I am going to do. Do we need a Phase IV trial for drugs AFTER they are approved to determine whether any patient can afford them??? Being diagnosed with melanoma or any other expensive and deadly disease is unfair enough. Patients carrying that burden should not be denied access to life saving and extending drugs just because of their bank accounts. Should they? - c
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